Genetic counselors face new hurdles in red states

To understand the climate of fear that has gripped physicians in Texas and other states now rushing to ban or drastically curtail abortion rights, consider this story a genetic counselor from the Dallas area tells: 

Shortly after a six-week abortion ban became law in Texas in September 2021, a pregnant couple walked into a genetic counseling office with a heartbreaking dilemma. The couple had learned their fetus likely had a serious disease, and they were considering termination. But according to the new law, the abortion would be illegal, and anyone involved could be sued for $10,000 or more. “And one of the things that they said was, you’re not going to tell on us, are you?” recalls the genetic counselor, who asked not to be identified. “A patient who’s already going through such a horrible, trying time is now worried that someone’s going to turn them in, in some way or form, just for ten fucking thousand dollars.” 

The counselor had worries of her own, as well. She has not stopped discussing out-of-state abortion options with her patients, even though there is a possibility she may now face legal consequences for providing that information. “At the back of my head, I’m always like, okay, is the patient bringing this topic up for typical, normal reasons? Or has someone been hired, so to speak, to come in and try and find clinics that are talking about termination?” She says she now has to do detective work at appointments, reading body language and the words a client uses to sense if something is off. “It puts a lot of mental burden on you,” she says. 

The counselor says laws like the Texas ban are alarming because “it pits providers against patients.” The 2021 law, since deemed constitutional by the U.S. Supreme Court in its Dobbs v. Jackson Women’s Health Organization decision rolling back abortion rights, is more extreme than many. While a few places – including Arkansas, Missouri and a city in Ohio – have tried introducing similar legislation against facilitating an abortion, advising a pregnancy termination is still legal in most states. But even in those states, conversations between patients and providers are complicated by extra barriers to abortion access and intense time pressures on patients to make decisions quickly. The impacts are especially severe for low-income women who have fewer options.

Prenatal genetic testing includes a range of optional screening and diagnostic tests for genetic disorders. Screenings, which can be performed in the first or second trimester, use parental blood tests to discover the likelihood of a fetus developing conditions like Down syndrome, Edwards syndrome and heart or spine defects. To confirm whether a fetus actually has a given condition, doctors then perform diagnostic tests on cells from amniotic fluid in the uterus or from the placenta. Now, genetic counselors in red states across America face wrenching decisions: How can they continue to fulfill what many see as an ethical obligation to provide women with important medical information about their pregnancies, even at the risk of legal consequences?

A genetic counselor in Utah – which has an 18-week gestational limit on abortion – says she and her colleagues “want what’s best for a patient,” regardless of the choice the patient ultimately makes. The time for that decision has been compressed to mere days in some cases. “It’s ridiculous. I mean, people don’t even find out their anatomy scan [or ultrasound] until after 18 weeks,” says the Utah counselor, who also requested anonymity. “A lot of people are doing these tests when they’re supposed to do them, but not given the information until after it’s too late for them to make the decisions that are best for them and their families.” 

“For us, it’s like, well, we want to support you, but we can’t,” adds the Utah counselor. “When we make it even harder for them to have reproductive options, it’s kind of like we’re slapping them in the face.”

A core principle of genetic counseling is to provide clients with choices, not instructions, says Nanette Elster of Loyola University Chicago, who is an expert in the intersection of law, public health and ethics. But in a state like Texas, that could now be considered a criminal act if information from a counselor prompts a woman to terminate her pregnancy. 

“What’s legal to do may not be ethical to do, and what’s ethical to do may not necessarily be legal,” Elster says. Even if their personal and professional ethics call for informing clients about all their options, including abortion, “it is absolutely understandable that a professional may say, ‘I can’t bear these legal burdens,’” she says. “Professionals are still human beings.”

The precise legal risks are still uncertain, and thus perplexing to counselors. Thirteen states are now enforcing bans on most abortions, about half a year after the Supreme Court’s Dobbs decision cleared the way by overturning 49 years of legal precedent under Roe v. Wade and declaring that abortion access is not protected by the U.S. Constitution. In these states, some counselors fear the law may be interpreted to restrict providers from sharing information about abortion services and information. 

Six states – Mississippi, Missouri, North Dakota, South Dakota, Ohio and Tennessee – also specifically ban abortion based on the discovery of a genetic anomaly. The first genetic-selective ban was enacted in 2013, about a year after new, noninvasive technology made screening for genetic anomalies like Down syndrome easier. 

Politicians backing genetic-selective bans say these laws support the rights of disabled people. Some bioethicists, however, note that their advocates may be motivated by anti-abortion political beliefs. They say these bans are not accompanied by broader legislation for disability rights, and in practice, the laws don’t help the disabled community. 

In fact, the practice of genetic counseling is far more nuanced than these laws suggest. A positive result for a given condition indicates an increased risk of developing the condition – not a certainty. Doctors and counselors can help patients who receive screening tests interpret the complex data. 

“So much is based on probabilities, which is hard to understand for just about anybody,” Loyola’s Elster says. The screenings are conducted early in pregnancies and aren’t diagnostic tests. Instead, they’re used for risk assessment. “Getting this predictive information can be challenging,” she says. “You know, what do you do with that?” 

A positive result doesn’t automatically result in terminating a pregnancy, Elster stresses. “Learning of an anomaly through diagnostic testing, the recourse is not this done deal of a pregnancy termination,” she says. These are individual choices made by families for a variety of reasons, and testing can help parents gather information and prepare. Sometimes that means having the right specialists available during high-risk deliveries. Other times, it’s a decision to terminate the pregnancy and take care of existing children in a family with limited resources. “This is not the sort of callous, casual decision that is discussed in the media when supporting it,” Elster says.  

Commercial companies that provide genetic screening services have also suggested that a positive result often results in termination, according to bioethicist Megan Allyse, who studies reproductive ethics at the Mayo Clinic in Florida. When new, noninvasive tests like cell-free DNA screening became available in 2011, she says advertisements to consumers pushed the message that the tests could be done earlier in a pregnancy. The screenings, which use blood from the mother, are available as early as 10 weeks; at the time of their debut, Roe v. Wade set the federal abortion threshold around 23 or 24 weeks. So, though not stated explicitly, “the subtext there is early enough to get an abortion,” Allyse says. 

That time crunch is now heightened in states with strict restrictions on abortion beginning at 15 to 20 weeks, and it may lead to more pressure to make a decision about termination before the deadline. This is partly because patients often can’t confirm whether the fetus actually has a genetic anomaly until this time or later. The non-invasive screening tests women often receive early in a pregnancy aren’t diagnostic and may return false positives. “Ironically, there will be people (who) decide to proceed with ending a pregnancy because they cannot take the chance of waiting,” says Laura Hercher, a genetic counselor at Sarah Lawrence College in New York. In these cases, she says, patients would have tests done earlier in fetal development than recommended “because later was too late.” This time pressure is further complicated by uncertainty about exactly when most pregnancies begin. 

Patients also need time to process the complicated emotions that come with a positive result for a genetic anomaly, according to Mayo Clinic’s Allyse. “If you don’t have time to maybe say goodbye to the baby that you thought you were going to have and say hello to this baby, then you may make decisions in that concentrated stressful time that you would not necessarily make at other times,” Allyse says. “And unfortunately, you know, the data show that in that moment, the majority of time there is a perceived pressure towards abortion.”

It’s not only prospective parents who are affected by these legal pressures. They take an emotional toll on genetic counselors, too, according to a 2021 study. A counselor in Arizona, which now has a 15-week gestational limit, says she has felt a greater burden. “It’s awful having to talk to somebody who wants to make this decision,” adds the counselor, who asked not to be identified.

She recalled one patient she counseled before the Dobbs decision whose fetus was diagnosed with Turner syndrome, a condition which often results in miscarriage. The patient wanted a termination but lacked the resources to access one. “She told me, ‘I’m just waiting for my baby to die.’” The patient eventually had a miscarriage, which the Arizona counselor says was likely harder on her than a prompt elective abortion would have been – both physically and emotionally. “I can imagine that there are many, many more women who are in that exact same boat now,” she says. “It’s horrible.”

The turbulence following the Dobbs decision has died down somewhat since June, but uncertainty for health providers remains. “Genetic counselors are literally on the phone with their lawyers every day, being like, ‘I don’t know what the law is today, tell me what I can and cannot talk to my patient about,’” Allyse says. “They are supposed to come to work every day and provide the best care to the best of (their) medical knowledge to their patients. And now they’re being told that the best of their medical knowledge is illegal.”